Tourette’s Diagnosis – A Personal Journey

Please note, the author of this article would like you to know that she has dyslexia and that some phrasing may be challenging to read.

In certain ways, I was better off not having been diagnosed and labeled early in life. [this will always be my personal feeling] Yet I can look back now and see the challenges and results of this condition, and I wonder if I could have avoided them. I didn’t know this wasn’t just a normal experience for me.

I do know I accomplished a lot of things I may not have had the opportunity to had I been diagnosed and told I wouldn’t be able to be a Childcare Worker, Montessori Teacher, a Legal Administrative Assistant, or a Writer (I also have dyslexia and HF Autism). Noticing my symptoms early on may have made them more pronounced, with autism (comorbid – OCD) the stress of thinking about it would have been a lot.

These are assumptions made with reasonable probability due to the stigma attached to conditions labelling them a disability or challenge. Even well-meaning people can hold you back with misunderstanding and standardized structures of learning and practice [this has proven true for most of my conditions and life].

For example, when I was diagnosed with dyslexia in grade 8 my father opted to put me in general public school rather than the suggested technical school. I may have struggled, but the accomplishments are all mine (I won 3 awards in English for stories I wrote, after they put me in grade 10 because my aptitude test was too high for grade 8).

Now getting a Tourette’s Diagnoses at my age, not impossible…

It’s finding the right person and medical professional with a reasonable knowledge of Tourette’s here in my city. I have located a couple of specialists in other provinces (I have not called to see the waiting time for an appointment, but I imagine I would have time to plan a trip…I guess), although most specialize in therapy to treat the condition not diagnose it.  [I am hoping I will find something on Planet Neurodivergent😉] 

I plan to talk to my doctor about it, but they are clear that the symptoms must be preventing quality or function ability in life. This is very hard to prove, even to myself. I have never been diagnosed with Tourette’s, having a mild form as a child it went unnoticed.

It wasn’t until the increase in the effects more recently became harder to control that I even noticed the condition: the build-up in my chest just before a verbal tic, the inability to stop or prevent myself from tapping my fingers, hands or feet in public, even with much efforts to distract or calm.

I noticed how much I isolate myself in fear of becoming stressed and having uncontrolled outbursts in public, saying things that I don’t understand why I would say them, this is increasing gradually and it’s been harder to keep others from noticing over the past 2 years.

The increase of pressure and tics started mildly and controllable around the birth of my daughters. I was taking jobs that allowed for independent working conditions, less personal contact, stress and short hours. I still hadn’t noticed this wasn’t a typical life, but now almost 50 and perimenopausal, hormonal changes fast approaching, I have started to become concerned with the inability to hold back verbal and non-verbal tics to an uncomfortable level. I often feel the need to yell out loud inappropriate things, usually triggered by being startled, but other things like stress and unexpected changes play a big part in this as well.

This makes employment difficult and has since my 20’s, I have a 5-year maximum at a job before I start feeling uncomfortable or bored as I call it. I think as long as my mind is occupied with tasks I am ok, as soon as I become too comfortable or someone starts mentioning things I do that are different or (weird is usually the term) I feel it is harder to control outbursts, tapping, OCD, etc.

For the past 7 years, I have cared for my senior mother who has early-onset Alzheimer’s. Due to the need to be closer to home, I decided to start my own business Kustom Re-Klaimed (KRK) in 2019. Had it not been for starting my own business I would have been more concerned about my income and worried if Tourette’s would be an issue for me now in a workplace.

I still worry my condition will cost me customers and cause other issues, (my business is on-line mostly, selling upcycled items, so transactions are usually in person, I also have plans to do demos and events). 

“I could say Tourette’s makes my life more difficult, but I could not say I can’t function, nor could I prove it affects my quality of life, even thinking like that could be overwhelming for me.” 

Having cognitive challenges, life would be devastating if I gave into or gave up on any challenges. Fighting to have the right to be included is something you can’t let take you down, no matter what people tell you or what you have to face or overcome. It becomes part of your self-esteem/self-image and having to give up this fight would probably mean dealing with depression.

In the past I have not disclosed my conditions, even the ones I have a diagnosis for. I most likely would not have been hired at the #1 law firm in Manitoba right out of school for legal administration assistance had I disclosed I was dyslexic…but my 96% grade average doesn’t say disability (it’s when they meet and get to know me and its never disability, its usually weird, odd and other terms – some crack me up – once I was told, your not an “A” typical personality type, not sure what letter you would be…lol (shrug)) I’d like to say I am more empowered and overcome it all, but really I except being weird. 

Writing this article is part of my journey in acknowledging, accepting and allowing me to be exactly who I was born to be – I feel with the current effects of my condition it needs to be known; who I am somewhere in my life, that I am proud of my accomplishments, that I plan to learn more about my conditions and get support to continue to move forward.

“I have watched and tolerated a lot of people who behave rudely in public and towards others, loudly talking on cellphones, pushing through crowds, rude remarks, etc.. (maybe they have undiagnosed conditions). I always think, if everyone tolerated this behavior without reason or condition then why have they never just accepted the quirks that make a neurological or cognitive condition stand out?”

I feel OCD and Autism are my superpowers, they help organize my day to keep stress low and I don’t have the personal connection that allows some people’s rude comments to affect me the same way I have seen them affect others. 

A couple of personal analogies:

It takes approx. 2-5 minutes for me to realize that someone just served me a backhanded compliment, by then they are gone and feel empowered by their clever insult, I shrug it off.

It’s like if someone walks into a store and they want an item, the name brand ones are all sold out, there is a shelf filled with the same quality, no-name item and the person would still rather keep looking for the name brand item then settle for the same quality, in a different package.

“It’s not the diagnosis, nor dealing with the condition that makes it hard, it’s the perception of others, the fact most don’t understand but still judge, comment and hold more authority with their words than I would with my words and what I know about my condition.”